One of the most common misconceptions about PCOS is that it looks the same for everyone, but the truth is there are different types of PCOS – and this can be a barrier to both diagnosis and treatment.

If you have PCOS or think you might have it, here are some things that you should know. These can be great talking points with your doctor. Remember, if your doctor makes you feel uncomfortable or invalidated when discussing your diagnosis in-depth, or does not seem knowledgeable about these points, it’s completely within your power to find someone better able to work with you!

Polycystic Ovaries Do Not Always Mean PCOS

There are a few types of PCOS, and you might be surprised to learn that not all of them require you to have polycystic ovaries (as diagnosed with an ultrasound). I’ve had clients who have polycystic ovaries but do not have PCOS when you look at the hormone panel, and clients who do have PCOS but not polycystic ovaries.

According to the Androgen Excess and PCOS Society, the most important indicators of PCOS are elevated androgen levels – these are the typically ‘male’ hormones in the body like testosterone and DHEA – and irregular or absent periods. All types of PCOS are marked by these indicators, but not necessarily by polycystic ovaries. In other words, if you’ve been given a PCOS diagnosis simply because your doctor saw polycystic ovaries in an ultrasound, this is not enough for an official diagnosis.

In fact, many healthy women have the occasional ovarian cyst. Many women may also have an anovulatory cycle once or twice a year in which they do not ovulate and appear to have polycystic ovaries. Dr. Lara Briden writes in her book The Period Repair Manual:

“An appearance of polycystic ovaries means that you did not ovulate that month. It does not explain why you did not ovulate, nor does it predict whether or not you will ovulate next month. Polycystic ovaries are extremely common. They occur in women with polycystic ovarian syndrome. They also occur in women who take the pill, and in women with normal hormone balance.”

Different Types of PCOS

You may have also heard that women with PCOS experience hair loss on the head, hair growth in unwanted areas such as the face and chest, acne, and tend to be overweight. This is true for a certain presentation of PCOS, but you can also have different types of PCOS without some or all of these symptoms.

The symptoms listed above are most common in Insulin Resistant PCOS. Insulin helps to move sugar out of the bloodstream. In insulin-resistant individuals, the insulin stops responding to the sugar in the bloodstream and essentially stops doing its job. But, the pancreas continues to crank out more insulin in an effort to remove the sugar. This leads to high glucose and high insulin levels. High insulin can contribute to excess androgens in a few different ways:

• Insulin causes the ovaries to produce more testosterone.
• Insulin suppresses the production of sex hormone binding globulin (SHBG), which normally binds to testosterone to maintain hormone balance. Without enough SHBG, you get too many androgens.

Insulin is also a fat storage hormone, which often leads to weight gain and excess estrogen. Too much estrogen can inhibit the release of follicle-stimulating hormone (FSH). This, in turn, can lead to high luteinizing hormone (LH) levels. In combination, this results in inhibited ovulation.

Insulin Resistant PCOS is the most typical presentation, but there are other causes and types of PCOS that include:

Post-Pill PCOS: Many women receive a diagnosis of PCOS when they come off of the birth control pill. This is not always an accurate diagnosis – sometimes it is handed out when there is simply a lack of regular ovulation. You will know that you have post-pill PCOS if you have elevated androgen levels, had regular periods before using the pill and have ruled out insulin-resistance. Past pill users will typically have elevated SHBG levels, but will also typically have an imbalance of LH compared to FSH, with LH levels being too high. Remember, post-pill use both FSH and LH levels may be low, but you’re looking for the ratio of LH to FSH to be off.

Nutrient-Deficient PCOS: A deficiency in several nutrients can lead to irregular ovulatory function, elevated androgen levels and PCOS. Key mineral and vitamin levels to test include: vitamin D, selenium, iodine, magnesium and zinc. Remember, hormonal contraceptives like the pill deplete selenium, zinc and magnesium levels so this could also tie into post-pill PCOS.

Other Causes: Systemic inflammation, poor gut health, thyroid disease, stress and improper diet can all also contribute to PCOS.

Getting the Correct PCOS Diagnosis

Having an accurate diagnosis is key to addressing the root cause of your symptoms so that you can find relief!

To make sure your PCOS diagnosis is accurate, request a hormone panel. At a minimum, you should have your doctor test DHEA-S (this is the precursor to the androgen DHEA), Free Testosterone, Total Testosterone, Androstenedione (another androgen), SHBG, LH and FSH.

If you have PCOS you will have high testosterone, androstenedione or DHEA, and you may note high LH (remember this may just be relative to FSH), and/or low SHBG.

In order to get to the root cause of your PCOS, it is worthwhile to also see if your doctor will test for the following at the same time:

• Thyroid Stimulating Hormone (TSH)
• Free T3 (another thyroid hormone)
• Free T4 (another thyroid hormone)
• Reverse T3 (another thyroid hormone)
• Thyroid Peroxidase (TPO)
• Vitamin D
• Zinc
• Iodine
• Estradiol
• Cortisol

This will help to paint a full picture so you can assess your mineral and vitamin levels, stress, and thyroid and any role they might be playing in your hormonal symptoms. Check your levels against functional medicine practitioner guidelines as these will highlight any issue areas that your doctor may mark as normal.

This may seem like a lot of work, but remember, the more you know, the better you can address the issue and get yourself back on track. Because PCOS has different presentations, it responds best to different treatment protocols if you really want to manage it for good!

Sources:

Androgen Excess and PCOS Society

Lara Briden, ND. Period Repair Manual: Natural Treatments for Better Hormones and Better Periods 2015: 131-159.

Melissa Ramos, The Misconceptions of PCOS (video)

Robert L. Rosenfeld and David A. Ehrmann, The Pathogenesis of Polycystic Ovarian Syndrome (PCOS): The Hypothesis of PCOS as Functional Ovarian Hyperandrogenism Revisited in Endocrine Reviews 2016 Oct; 37(5): 467-520.

Robert L. Rosenfeld, The Polycystic Ovary Morphology-Polycystic Ovary Syndrome Spectrum in The Journal of Pediatric Adolescent Gynecology 2015 Dec; 28(6): 412-419.